PODCAST INTRO: Hey, Beautiful Soul, and welcome to Dear Body, I'm Listening. The podcast for women navigating chronic symptoms, invisible illness and that daily dance between hope and exhaustion. If you've ever been told it's all in your head, well, this podcast is for you, because your body is not lying and neither are you.
Hi, I'm Donna Piper, Movement Therapist, Bodies Instructor and Chronic Illness Navigator. After years of being dismissed, misdiagnosed and doing everything, quote, unquote right, but still getting sicker, I created this space to tell the truth. Here, we talk about swelling, brain fog, nervous system crashes, and the symptoms that don't always show up on lab results. We're going to explore lymph breath movement, self trust, latest research, books, relationships, basically everything, all from a place of compassion and honesty. This isn't about fixing your body. It's about finally being heard and getting some answers.
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Hi, everyone. What Is MCAS, and Why Do I Look 6 Months Pregnant by Lunch? Have you ever eaten anything and got really bloated, or your stomach hurt? Or have you ever even heard of Mast Cell Activation Syndrome, which is MCAS? So if not, you're in the right place. If you're running on 30% and pretending like you're running on 100%, well, welcome. You were not alone. And again, you are in the right place here. So let's get into this Real Talk recap.
Let me take you back to November 15, 2023, the first time I've ever heard of Mast Cell Activation Syndrome, let alone knowing what it was. And I have been to functional doctors for the last 15 years about stomach problems, and I'm in the health and fitness world so I thought I pretty much knew everything was out there. This was new to me, low histamine, no histamine, histamine diets, all that like, how did I miss that whole segment of buzzwords? But I did. So once it was explained to me what it was and why I was bloated all the time, and I looked pregnant after eating super healthy foods, again, I would start my day with some sweet potato, some eggs, some good fats, some sauces and a well balanced meal, and then I started to blow up. And then by lunch if I had a salad, then I'd even get bigger. So I was having really good items, but I was eating fermented food. I was eating olives, all the good fats, sauerkraut, kombucha, things from a can. I would eat tuna fish because that was easy. I could make a really nice salad. And again, all of these things I kept on my stomach hurting all the time, and it would hurt and blow up really big.
I went out to eat, or ate at home, and I was continuing to have brain fog. I was continuing to be super tired, not knowing what to say. Words weren't formulated. Being in a lot of pain, waking up tired, feeling some itchy or rash. I don't get a ton of that, but it was a little bit like my skin would be itchy or my nose would be runny after. And I never put any of the stuff together at all because I was allergic to anything. I've also had tons of food tests. I was like, of course, that would come up. But the only thing that came up that I was allergic to was gluten and soy. And gluten is a big one for our lipedema. Typically, women that have lipedema for whatever reason are allergic to gluten, and gluten is not good. So there's lots of different schools of thought.
That's for other podcasts, but let's get back to what Mast Cell Activation Syndrome is. And since I had been dealing with severe bloating for years, and I'm not exaggerating. For decades after going to all these doctors, the doctors never told me anything. I had already spent thousands of dollars on this, and they thought maybe it was SIBO, or Gut dysbiosis, or stress, or not really sure what. They'd give me all these medications to take, and there were supplements to help, or maybe it was a parasite. So I probably did four parasite cleanses which probably, in retrospect, wasn't the best for the system. Having this, not knowing what this was, I think everything I did to try to help, it actually made it worse. And I was still eating really clean.
And so when I looked up, I got the list of foods that were high in histamine, or they either were high in histamine, or they activated the histamine. Or they blocked the DAO, which are all like foreign terms, I'm sure you know unless you've done your own research. Every single food on that list was healthy, and they're all healthy, I was eating them all everyday for decades. So really, I was just poisoning my body with every bite I took. And I had definitely no idea that my mast cells were such a part of the immune system, and they were in full revolt.
So what did I learn? Let's get into lymphatic. What is MCAS? MCAS stands for Mast Cell Activation Syndrome. And the mast cells, what do they do? They're supposed to help your body detect danger and release protective chemicals like histamine. So histamine is something that your body needs. It's a defense. It's like microseconds that this happens. It doesn't take a while. They're actively instantly there. And there's lots of different mast cells for different reasons. If you look at the charts and any sort of scientific research, there's lots of different mast cells. They do lots of different things, but the ones that I have issues with, they create a lot of histamines. So all the time, just flooding my body. So when that happens, that becomes the autoimmune issue, then your body's kind of attacking itself because there's so much, and it's trying to get rid of it. So it's attacking that. It's like this endless cycle. And then when I'm eating things that seem harmless, like good healthy foods, that activates it. Then fragrances might come in, that activates it. Temperature changes outside, everything is a threat. So my body is in constant threat.
Your body is pulling the fire alarm constantly every time you eat something like a salad, or walk past something that smells fragrant, or wear the wrong fabric, or use the wrong detergent, or who knows what. And it's an experiment. So when I say, who knows what? It really depends on what happens to you, because there's some general rules out there. However, like all of these other diseases I'm talking about, all these other illnesses and conditions, it's an experiment. So not everyone behaves the same way and reacts the same way. There's some generality, and you have to trial and error, trial and error. So I think it's freaking exhausting, but that's me.
Some days, my brain can be wired for figuring stuff out. But a lot of times, I forget. Or I start tracking, and then something else happens. I have a really bad flare day, and I forget to track, or I forget that. Or maybe I'm having a lot of energy so I'm doing something else, and I forget. So the consistency because of how this is affecting me neurologically with my mind, with my memory, with my mood, with my energy, sometimes it really all of these systems that I put in place don't always work because I don't have the energy to work them. And that is really for me, and maybe someone else that are out there relates to this, and that's why I'm talking about it. That's normal. It's not going to be just as easy as to cut out these foods, and you'll start feeling better. I did once cut out the big list of foods. I did start feeling better, but I'm nowhere in the journey where I'm healed or I'm on the other side. I am in the thick of it every day, and some days are better than others.
So let's get into some of the symptoms of MCAS, or they also call it MCAD, or you can have histamine intolerance. There's lots of fancy words. But basically, this is what happens in your body. If you have some sort of histamine reaction, you might flush or overheat after eating. If you eat something and your face turns red, or if you just get really hot, that's typically histamine. You have a belly bloat or stomach pain, which I did for most of my life. There could be skin itching, rashes, or random hives, and a runny nose. That's something that I really know. And the other thing, even if you find some foods that work for you, you can also somehow be allergic. Because sometimes, it takes three days for you to know what you're allergic to. And that's the other thing that makes it difficult. Because if I eat something today and I feel, oh, I'm eating, this feels fine. It may not have a reaction for 72 hours. Or the next time I eat it, I might get a runny nose. And a runny nose is a big thing. That's a really easy one.
If I know my nose starts running immediately after, I'm like, oh, there's something in here that I didn't know, or I'm allergic to a filler maybe, something that I thought I eliminated, or there's a fragrance, or there's something else going on. So a runny nose is a big one, especially for me now that I know to be aware of it. If I eat anything, if we go out to eat and I think I picked something clean and I eat, my nose starts running immediately. Like, oh, there's something in there that is not reacting well with me, and is giving me histamine reaction, also dizziness, heart racing and lightheadedness, brain fog. Anxiety is a big one. A lot of people that have a lot of anxiety, sometimes you have too much histamine in your body and it's giving you an anxiety reaction, or it could be sudden fatigue where that's a big thing with crashes with MCAS is that you have a lot of energy, and then you just can't get up.
And so people, if you have this, because it's not like, oh, I'm taking a nap or I'm tired. You literally have to lay down. It's not just you're tired, it's like fatigue. And then there's food sensitivities that could keep expanding. You could have trouble sleeping. You could feel wired but tired, and then you'll have relaxed actions to a lot of things like wine, vinegar, chocolate, fermented food leftovers, eating out foods in a can. I'll link to a few of the websites you can look at to see about histamine reaction, and some of the foods that are highly likely to have high histamine or cause histamine reactions. So after all that, I'm exhausted, just talking about it, right? I'm sure you're exhausted or overwhelmed if you're hearing this for the first time. Because honestly, MCAS can make you feel like you're allergic to everything, and trying to figure out what the real triggers are. Or if you just need to be away from those foods for a certain amount of time.
I spent decades putting all these really good foods that also have high histamine or create histamine reactions in my body, so it might take me several years to kind of get my body calmed down from putting it in, just pouring and pouring like gasoline on the fire constantly. It might just take a while for it to stop smoldering, and we'll just have to see. And it changes all the time. It does get frustrating to worry, and think about what kind of food I can have, and how long has food been left out on the counter. The best thing for MCAS is to put frozen meat into, not a crock pot because slow cooking is not good, into an instant pot or an air fryer. Don't defrost it in the meantime, because the more your food stays out, vegetables, anything that's longer in that dying phase, easiest thing, the more histamines it has. So that's why aged cheeses, cured meat, things like that that tastes good, but they've been out and exposed, they have more histamines in it because they're older.
So everyone, like I said, it's trial and error. But there are some guidelines out there. There's a link to a book that I got this little histamine pamphlet that this couple went through, and they tried to rate foods to just make it helpful. And then you can write in this book if you have allergies to it or not, and you would think like, oh, you would remember. But when you have all this stuff going on, your memory goes, you have this brain fog. I've had to write in there and reference a book a lot. I just can't remember everything that I'm allergic to, or I'm good with.
So another thing with this is, why did this take so long for all my doctors to figure this out? Luckily, Dr. Eicher was the person that diagnosed me with lipedema. And when I went to her, she told me that I had a mast cell. And that really isn't as overwhelming as it is, and it really kind of totally helped me try to go on a path to figure out what I need to eat in order to feel good. And most doctors only recognize the rare severe form called Masto psychosis, so MCAS often gets ignored or misdiagnosed. More doctors are becoming more familiar with it. But luckily, I just found a doctor that knew all of these things finally. And after she gave me the list, I came home and did my own research. And so I found The Swiss Interest Group Histamine Intolerance list and cookbook. So it's SIGHI, and I'll leave a link down in the show notes so you can look that up. And that's when I started cutting out my healthiest foods, like avocados, citrus, bone broth. I wasn't already eating tomatoes, but tomatoes are a big one.
And then what happened? So the swelling went down, as mean as my joint pain went down. My joints and my body felt less inflamed. My brain fell. Got a little lighter. So that was good, but still it hasn't resolved itself. I'm still in it, and it's been over a year, and I've tried different types. So I went from keto, because keto also is known to help lipedema, which we'll go into another time, and also into full carnivore. And now, I'm going back to keto a little bit to see what my body really needs. And even in full carnivore? What kind of meats do you have? How long have they been out? How are they processed? There's a lot of spices that don't do well with it. And other days, it feels like I'm just rearranging puzzle pieces that don't quite fit. And MCAS is not linear. And unfortunately, it doesn't come with a clear food plan.
So what is the MCAS link and lipedema link? Here's what blew my mind. MCAS also overlaps with lipedema, EDS, hypermobility, POTS and chronic fatigue syndrome. So chronic fatigue syndrome is like ME/CEF. I can' pronounce the ME part, but I will learn when I do that episode. Hopefully, fingers crossed, but they're all like sisters in the same dysfunctional family. And no one tells you all of the links. Fortunately, Dr. Eicher knew, and she told me all of these different links. I didn't have to guess, other than the chronic fatigue part, that was the only thing that was missing. But if I had known before in my last episode of histamine intolerance, just lymphedema was something that is genetic as well as a part of this connective issue, and it's linked to swelling, fatigue, joint issues, headaches and mystery symptoms, then I could have changed my diet a lot sooner. So again, I have a lot of things that I feel like I just didn't wake up one day and be like, oh, my gosh, I feel like shit. Go to the doctor and I got diagnosed. This has been happening for a long time, and I lived a very healthy, active lifestyle.
That's the other thing, why I think I still have a lot of energy and resentment around it, because I had put my stock in some doctors saying this is what you need to do to feel better, and I kept on feeling worse, and I never got the right diagnosis. I'm more agitated and irritated that doctors aren't trained to look for this, and that could have saved me tens of thousands of dollars, and tens of years of just this pain. And if you're listening to this, you're probably dealing with some chronic pain, and it is not fun to not have days where you don't feel like doing anything. It really does take a toll, even though it's like a gradual toll. But how you start to live your life is a lot different.
I was always an advocate for myself, and that's why I stuck in there, but I didn't have someone cheering me on. Because everyone, even my friends that don't have this, can't relate to what I'm going through. They think that I look fine, and I'm having a little about like, it's hard to explain to someone really what you're going through unless they either understand you because they've gone through it, or they're a medical provider that does have more knowledge about it and see patients with it. So we're going into this segment, what I'm researching and trying.
So back when I was diagnosed, I went on that Swiss Interest Group website. I found their cookbook, but it was out of print so I searched high and low until I found one from England, and I ordered that. I also looked for mass cell friendly low histamine cookbooks online. I found a couple. To be honest, the recipes weren't that great, but I did start there and then start to integrate into some food when that helped a little bit. So I had more energy to deal with making food and being more complex, that's when I went into keto, into carnivore. I also found Leslyn Keith, who works with the Lymphedema Simplified. I believe that is, I'll put a link to that. That's a whole organization, but she does her own thing, and she's really interested in many things. She does a lot of manual lymph drainage and other things. But keto and carnivore and how it can help these sorts of chronic illnesses, that group has been amazing. I've learned lots of things. And right now, we're really looking at some experiments with how much salt that I need, like sodium. I need to help with all these things, but also to help my immune system. Over the last year, I got pneumonia again in November, then I had respiratory issues at the end of December, and I just had another respiratory issue a couple weeks ago. So I'm experimenting, that can happen for me too. So I will leave some of the links below if you want to check those things out.
So now, let's have a good flow for the day. So today, I'm going to talk about a seated belly breathing for nervous system reset and histamine column, which is important to do that you have some sort of histamine or central nervous reset so you could go into rest and digest since your body's constantly in that protection fight mode. So this is a simple one, but it's really powerful. So here's how you do it. You sit upright in your chair with both feet flat on the floor, place your hands gently on your belly and inhale slowly through your nose. Feel your belly expand, and then exhale slowly through your mouth and feel your belly soften. And just repeat this for three to five minutes, or as often as you can, and as you do. Just visualize your whole body being supported by the chair every time you exhale. See if you can get heavier and heavier, and more relaxed, and more relaxed as you exhale. And this kind of deep, grounded breath work activates your parasympathetic nervous system. It's the rest and digest mode, and it sends your body the signal that you're safe, which keeps quiet your overactive mast cells. So a pro tip is to do this before meals, or when you're triggered or anytime you feel a flare creeping in, so you can be already in this rest and digest place. Just a few minutes of mindful breathing always helps.
If this episode made you feel even more seen, brought you clarity or reminded you that you're not alone, please take a moment to rate, review and send it to someone who needs that same reminder. You can buy more tools, blog posts and support over at donnapiper.com. And hey, don't forget to subscribe so you never miss an episode. Got a question for me. Every month, I do a listener coaching episode, and I'd love to hear from you. Send your questions, stories or flare of confessions to donna@donna piper.com, and you just might hear your answer on the show. Until next time, Dear Body, I'm Listening. I am so glad that you are here.
